Diabetes type 1 (young people)

School and diabetes

Here the young people interviewed talk about how they fit diabetes around their own life activities as far as education and work are concerned and some of the problems they experienced. They told us how their classmates, their teachers felt and acted towards them once they heard about them having diabetes.

Most young people found that both their primary and secondary schools were supportive. They remember their parents talking to head of year teachers. In some places the diabetes nurse made a point of visiting the school and explaining to teachers what they might need to do in class or on outings and taught them how to recognise and cope with hypos. Lewis parents said that things got better when Lewis started using an insulin pump because his diabetes became easier to control. Sometimes information about a student's diabetes wasn't passed on to everyone who needed to know, so that some teachers didn't know what to do if the student had a hypo. Young people pointed out that no matter how hard it may seem to talk about diabetes with teachers, it is very important that they know all the facts.

She found it easier to write notes telling her teachers that she has been diagnosed with Type 1...

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Age at interview: 17

Sex: Female

Age at diagnosis: 12

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And I've always told the people I'm around with, this is what you need to do.

In case you have a hypo?

It's awkward at first but once you've done it a few times... I remember when I was - when I first went back to school I didn't want to tell the teachers, but I knew it was important to, like, all my subject teachers, so I, like, wrote it on a slip of paper, on a computer, and printed it out, and cut them up, and just gave it to each of them and was like read this, read this [laughs]. That's what I actually did, because I didn't feel comfortable telling them, and so I just found it easier to just give it to them [laughs] so I did.

Okay, why? Why were you not comfortable?

I didn't like saying it myself. The first few weeks I couldn't say it [laughs].

Why, it was upsetting?

Yeah, it was upsetting, but I got over it, so'

Some of the young people we talked to had missed school before being diagnosed because they felt tired and drained (see also 'Symptoms of type 1 diabetes'). It could take time to learn how to manage diabetes and some people said that initially they hadn't attended school very regularly. One young boy who experienced severe hypos said he simply couldn't face going to school. (See also 'Hypos'.)

A welfare officer went to his home to find out why he was not attending school. After his...

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Age at interview: 19

Sex: Male

Age at diagnosis: 13

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Tell me about school life after you were diagnosed and you were having to take insulin, having to inject insulin?

Well before I was diagnosed my school life was really suffering. So the six months before I was barely attending because I just felt so ill I just, just didn't go. Then in fact the way the diabetes testing was prompted was actually that the school sent out somebody called an educational welfare officer because they were so worried I wasn't going to school. And it was actually that woman I think that first picked up that it could be diabetes. And she said go to a different doctor and get them to test you for diabetes. So actually it was, thinking about it, it was probably her that diagnosed me as diabetic rather than the doctors.

And what happened after that?

After that I didn't get back into the swing of school particularly quickly because I hadn't been there for such a while it felt a bit difficult going back. And I certainly didn't feel anything like well straight away after being diagnosed. But after about six months or so I was back at school fairly regularly. And it was. The school were good. They would say if there's something you want please tell us but they still couldn't for instance provide me with a place to go and do my injections. So it would be a case of just trying to do it when nobody is around really or going to the toilets and doing it in a cubicle there which isn't very hygienic for one thing. So it was difficult at school. After the first few months I was happy doing blood tests. Right at the beginning I would, I'd be not wanting to do that, you know in front of people. But certainly now I've got no worries about doing a blood test wherever I am. If I need to do it I'll just do it.

The one thing which wasn't very good was I, there would be people at the school that would know. For instance we let the head of year know at the school but the teachers I found out didn't know because I didn't speak to them personally. And I actually was under the impression that they knew that I was diabetic but sometimes, you know, if my certainly if my attendance hadn't been very good because I'd been ill for a week with the diabetes being bad they would. This is when I knew one of them, I realised one of them didn't know I was diabetic. They said you know, why are you off so much [name] I told them I was diabetic and they'd be very surprised. So it would have been really good if I'd have made sure if the head of year had made sure that actually all my teachers knew that I was diabetic.

So you thought that the head of year would tell them?

That's what I thought, yeah I thought all my teachers would know but very few of them did. So it would have been. It would just be nice for me to know that they knew.

So they could, you know, if I wasn't feeling well or if in class you know I wanted to go out of class I'd feel a bit more comfortable about knowing that they would know why it was.

School itself can be a big thing for young people following diagnosis because at the same time they are learning to manage their diabetes they have to satisfy the curiosity of other students.

He felt he managed his diabetes at school pretty well, but said that in the beginning other...

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Age at interview: 18

Sex: Male

Age at diagnosis: 14

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School was the really big thing until I got the hang of doing that. Well dealing with injecting and blood tests at school because straight after I came out of the hospital I was still on four tests a day to make sure the sugar levels and everything were ok. So having to do one at lunchtime. I was having, got into a routine as well doing it in advance of eating. So whenever I test, I inject, I eat [laugh] it was at the point where I was having to ask out of classes to do it. Like getting changed after PE maybe. Do one then.

I suppose I wasn't having to do it so much as having to explain to everyone [laugh] what I was doing, what was happening. That was... I occasionally wish I could have just, I'm sorry. I occasionally wish I could have just taken it, taken a little briefcase full of leaflets [laugh] maybe and handed them out to people because it was [sigh] yeah it was the explanations that was a problem [sigh]. But I was really lucky as well though in that close friends and family were all really supportive and really understanding. Yeah you get 500 different questions [laugh] but they all quickly accept it and say, ok this is happening now [laugh]. And I just took it in my stride. It wasn't, I didn't feel like I was being examined or watched to see what was happening or anything like that. But it obviously there is an element of people... of curiosity I suppose from other people.

All the young people remember keeping a box with snacks and drinks at school. Most schools made sure that the young people had their snacks at the time as instructed by their parents or nurse, and made it easy for them to do blood glucose tests when required. When they were younger, teachers often reminded them; some were allowed to keep an alarm clock with them or the whole class would shout 'it's snack time'. One young girl said that her mother would come into school at lunch time to check her blood glucose levels when she was having problems with her control. A few young people, however had bad memories because they were not allowed to have snacks in class.

Occasionally young people said that they felt as though they were being punished for having diabetes - for example one young woman said that her teacher would not allow her to do her injection in class and sent her out of the classroom.

When she was little her mother came into school to test her blood glucose levels. The main...

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Age at interview: 17

Sex: Female

Age at diagnosis: 2

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Now how was being a child and having diabetes and going to school?

Well, I used to, when I was in Reception I used to go home for my lunch, so my mum could check-up on me and make sure I was okay. And then she like, at probably middle, end of Reception she let me like stay in school for lunch. And generally I just had to take snacks into school with me and make sure I had my break, whereas the other kids might have not been able to have snacks at break. Like they made an exception for me. There were a few times when my control wasn't so good that my mum would come into school and blood test me like at break or lunchtime every, for like a week or so, to figure out what was wrong kind of thing. But I don't think really it's affected me terribly apart from the couple of times I've had hypos in school. Which has obviously been disastrous.

What about you vis-'-vis other children? Didn't you, were they asking questions? Were some of them unkind?

I've never had any unkindness about it, no. It wasn't really such an issue in primary school because I was only on two injections a day. So nobody ever saw me doing injections. It was only when I had a low blood sugar. And they all seemed to know what was going on. And they'd go and get a teacher or whatever. So they were all fairly understanding in that respect. Now I'll be on the four a day, doing it in lunchtime, there are a few squeamish people who are like 'Ooh'. And I'm like, 'Okay. I'll go and do it somewhere else'. So that's the only really problem, squeamish people.

At primary school she stopped eating her snacks because her teacher would send her out of the...

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Age at interview: 18

Sex: Female

Age at diagnosis: 6

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What was the problem? When they put you in hospital?

My teacher at school didn't really understand about my diabetes, didn't want to learn about my diabetes wouldn't let me have snacks in the class, she let, made me go and sit outside in a corner somewhere which made me feel like I was being naughty or something because I'd been sent out of the class. Which she did to everyone if they had done something wrong, she would send them out of the classroom. And I got to the stage where I was hiding my snacks because I didn't want to go out to eat them. She wouldn't encourage me so I'd start hiding my snacks and, and that's so people think I'd eaten them but I hadn't.

Then I was ill and the doctor turned round to my mum and said, 'We need to sort her blood sugars out. Keep her off school and let, but do normal activities with her. Take her shopping and like go and do activities with her to keep her active so we can keep an eye on her blood sugars.' And we were, told the school this and everything. So my mum took me into [city] one day and my teacher saw me and stopped the car, had a go at my mum and that for keeping me out of school and all this. So I went back to school and that, and my diabetic nurse said, 'If you're not going to take your doctor's advice, and not listen to your doctor, then we're going have to take it into our hands.'

So they took me in to hospital so, and what, while I was in hospital, so they could keep an eye on my blood sugars, they used to send me down to the gym and that so they could keep me active. The diabetic nurse went into my teacher and talked to her and that, and when I came out of hospital, totally different situation. She kept chocolate bars in her drawer and she used to say, '[Name], it's snack time,' let me eat in the class. And that, but it wasn't my fault that I ended up back in hospital, it was that this teacher was being so funny.

And how old were you?

I was nine at the time Yeah, I was in Year Four, so I'd be nine when that happened. So, to me, it's like, obviously my diabetes was going down a bit because like my mum would go in my bedroom and find my snacks hidden all over my room because I was too ashamed to go and sit outside to eat them as I felt I had done something wrong. And that, because she wouldn't let me eat in the classroom and that, so I didn't want to eat them so I stopped eating my snacks.

Young people remember that schools in general did not treat them differently because they were diabetics. However, a few remembered being excluded from some sports and school outings because the teachers didn't want the responsibility. Others said that as young children their parents hadn't allowed them to join in games/activities.

She talks about the attitude of all her schools and says her present school is brilliant.

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Age at interview: 17

Sex: Female

Age at diagnosis: 1

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What was the attitude of the teachers?

Mostly they were really good especially in my first school, teachers were excellent. They didn't like pay me extra attention because I was diabetic and like make sure, well they, they made sure I had as, I was fine and that I was eating things like when I needed to. But they weren't always like picking on me and making me do things because I'm diabetic.

My middle school was ok. I wasn't allowed on the netball team because I thought, they, they thought that I would. Oh I might collapse or have a hypo at things and something like that. And I wasn't allowed to, yeah, things like that sport and I wasn't allowed like the main part in a play because they thought I might have a hypo during a performance. But that was at my middle school and the teachers generally there were ok, I mean especially the head master. He let me go to France [laugh] which was quite good, on a school trip but no, that was ok.

But my current school is brilliant. I'm doing DofE gold at the moment which is like the most exercise you can do. I did bronze in Year 9, no Year 10, Year 10 and silver I did last year which was [laugh] three days hiking in the Peak District so you can definitely do sport with insulin and diabetes [laugh]. But no, I had to do careful planning for that but it was achievable definitely. But now I'm looking forward to going to Canada in 2006 canoeing for DofE gold.

So yeah, my current school has a very positive attitude towards it. We have I think about three diabetics in my school and you're not treated any differently or anything. It's just a thing that goes on. I mean all my friends know that I'm diabetic and they know that if I start being like grumpy and moody and things like that they know I'm going low and they'll make me eat sugar [laugh] or if I'm high they'll make me like run around which is fun [laugh]. But yeah it's very good.

Oh in middle school I was 8 to 11, between those ages.

How does it make you feel, how did you feel at that time?

I felt angry because I mean I'm not different. I can handle myself. I know when I'm going low and I'll stop and I'll say 'Hey I need sugar, I need Lucozade or whatever'. And I did feel annoyed that they thought that because they were the teacher they had control over me and they thought they knew what's best with me when they really didn't. And so. But I guess they were just trying to cover themselves in case I had like a seizure or [laugh] whatever.

Her mother had concerns about a school trip and so asked the opinion of the diabetes team who...

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Age at interview: 16

Sex: Female

Age at diagnosis: 7

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Did you go on school trips and sort of sleepovers and going on a school trip for a week or something like that?

In year six, that was my first trip, like that for a week and I had one of the nurses from the team came and talked to my head teacher to make sure that she knew everything and provide her with like glucose and those sort of things, hypo stop. So my mum was a bit concerned about letting me go, 'cause it was for the first time as well when I was in year six, but when she asked the doctors and nurses what to do, as in to let me go or not, and they said that I should go for it.

Have you talked to her or, have you had disagreements about these issues or?

Sometimes, I think it's more about growing as a child in general not just with diabetes, but, it has a factor in arguments that we'd have. Like if I wanted to, mainly going out and being more independent myself when I was, like a couple of years ago my mum would be a lot more wary, but now she's sort of understanding that I am responsible enough to go out on my own. And my, I have an older sister who's four years older and she sort of looks out for me as well, makes sure that I've got the right things when I go out and she'll like call me every now and again.

Young people pointed out that it is fine to go away with the school provided you make sure you take enough medical supplies and snacks to last the whole trip. They advised that if in doubt you should always ask your diabetes care team or your GP for advice and information. Also you can ask your diabetes nurse to visit your school and explain everything to the teacher responsible for the trip. (See also 'Travelling abroad' and 'What makes a good consultation with the care team'.)

Finger "pricking" at school

For some, doing injections or testing their blood glucose levels during school time, can be difficult. In secondary schools, most young people went to the medical room or toilets to do their injections because they felt self conscious and wanted privacy. When they moved into the sixth form though, most were more confident and so began doing their injections in the classroom or 6th form common room.

Many young people indicated that they do not test their blood glucose levels at school. Several told us they often forgot to do their insulin injections when they were younger because they would rather be with their friends than coping with their diabetes.

She often forgot her lunchtime injections in year nine at school, because she preferred to be...

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Age at interview: 17

Sex: Female

Age at diagnosis: 2

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Do you remember what insulin you were'?

Yes. When I was in primary school up to I'd say Year 9 secondary school I was on two injections a day, before breakfast and before my evening meal. My insulin, I used to be on, when I was younger, a child, I used to be on very low amounts of insulin, that increased as I got older. So when I was in about Year 9 I went on four injections a day. However the first time I went on four injections a day, because I'm on four injections a day again now, but I did go off the four injections a day I think after about a year because it didn't seem to suit me. I think I was, I can't remember exactly but I did end up having some problems with it.

What type of problems?

I think I was, I can't really remember why I went off it, because I'm on again now and it's absolutely fine. I think it was just because I had to keep my midday injection in the office at school. And I had to keep going to the office at lunchtime, every single lunch, and I forgot my lunchtime injection so many times. But, so I went back onto the two a day, when it was easier because it was before breakfast and before dinner. I could do it at home. There was no problems at school. But now I'm in the Sixth Form it's easier to just keep my injection in a bag, and I seem to be able to remember to take it now. And so four injections is a lot better.

So how old were you when you were in year 9? 13?

13, 14 years old.

So, and at that age you had a problem with remembering your lunchtime injection?

Yes. So then I went back onto the two a day. But I ended up having a very bad hypo when I was on two a day. That, I think it was in the summer some time, during the night, I had a very bad hypo. So we went back onto the four a day and it's been fine this time.

For how long did that period last? They had to change your injections because of that didn't they?

Yes. I went onto the two a day regime again that I had been on before. But then I ended up having again some problems with that one. So I went back onto the four a day at the s-, in the start of Sixth Form. I found this time it worked fine for me. And it's, generally my control is better now than it was.

And you are not forgetting injections?

Not as much as I did anyway. A few times when it's like half an hour after my dinner like, 'Oh, forgot it again'. But it's not like majorly like it was last time of forgetting it every day.

Why do you think you were forgetting so often?

I don't know. It's just, you know, lower down the school there was like, I don't know, I wanted to be with friends at lunchtime, doing stuff. I didn't want to have to be trudging over to the office to get my injection and everything. And so I'd just end up getting into a conversation or going and doing something and not remembering to do it.

Not very surprisingly some young people indicated that their schools did not have appropriate facilities - such as a room they could go to at lunchtime to do injections and blood glucose tests. (See also 'Insulin' doing injections everyday'.) A few young people pointed out that their secondary schools made special arrangement for them like allowing diabetic students to do their injections just before lunch time and being served first in the canteen, which was seen as extremely helpful.

Many young people indicated that they had had hypos or gone 'low' at school. If they have a mild hypo they would take glucose tables and eat something. Most have told their friends what to do on those occasions. And a few said that they keep a blood glucose monitor at school as well as at home. (See also 'Hypos').

Peer groups at school

Teachers play an important role in helping non-diabetic children understand diabetes and what to do if a diabetic child needs help. Many young people said that when they were younger they had been asked by teachers to talk to the class about their diabetes which had helped, though some found they got annoyed when their classmates asked lots of questions. One young man remembers that before his presentation his classmates thought that diabetes was catching! Others found, once they had talked about their own diabetes, that others - teachers as well as students - were also diabetic which was reassuring.

Some children at primary school level experienced some bullying in the form of named calling and although mild it can be an upsetting event. One young woman however, found herself been 'picked' by the school bullies because she was 'different'. (See also 'Friends and relationships'.)

Said that if bullies understood about diabetes rather than making fun at diabetic people the...

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Age at interview: 22

Sex: Female

Age at diagnosis: 9

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So when you were growing up with diabetes, perhaps one of the most difficult times is when you are in secondary school?

Yes, yep, definitely because, you get bullying everywhere, I'll admit that, everybody'll admit that, but you know? [Exhales] you just deal with it, if you had the kind of attitude well okay I'm here, this is what I have, please ask a question, please, you know, you know, ask 'Why, why, why,' why're they stood there laughing at you, or, or making rude comments? Blatantly go and say, 'Well, you wanna ask a question please do, I have as much information as you want'. Or, 'Please go on this website'. Or, 'Please go to the doctors'. Or, 'Ask, there's plenty of leaflets'. And, you know, all sorts that, you know, there's so much information about diabetes or any other illness, or disability, or whatever out there, and if these people instead of stood there making fun at you did that then the world would be a much nicer place.

Was it because you were injecting in public or?

No.

Because you, you happened to have diabetes and they didn't know what the bag was for?

Yeah, really I think the most [exhales] the most of the, the problems came from the fact that I had this little leather handbag and I was carrying it around with me, 'cause we didn't have pockets in our uniforms, you know? And we weren't allowed to carry our, rucksacks or, our, you know, big bags around with us all the time. And everyone knows you're gonna have something with you all the time because no-one knows when and where a hypo will strike. [Dog barking] so eh yeah, yeah, I think mainly, yeah the problems came from that, my little leather handbag [laughs].

You were different? In which way?

Absolutely yeah, no-one likes anyone that's different, so.

Let's talk a little bit about your experience in secondary school. Did you talk to your Mum around that time?

Yeah

Okay.

Yeah, I think well if , if I didn't have her or my Dad, I wouldn't have got through it, you know, so, well sometimes it was very, very difficult and sometimes I was just, you know, [sighs] where do I go from here? And, okay so I've, I've sounded quite positive, but, it wasn't easy, you know? To say, yeah to say that I was constantly ill, oh yeah, yeah it's fine, you know, bully me I don't care, to say that would be a lie. Because it wasn't easy, at all, it really was not because it's not, you know, at the very end of the day, bullying, it's not right, everyone knows that, even the bullies know that, bullying know, you know bullies know that you shouldn't make people feel like that.

Taking exams

Many young people are worried about having a hypo or going high during exams. Some commented that they had failed an exam because of it and had to re-sit the exam. All of them were allowed to take snacks, a drink and glucose tablets with them. In some unusual cases the head teacher might advise a young person to apply to the local education authority for extra time during exams. One girl we talked to who has had severe episodes of hypoglycaemia (hypos) was granted extra time. You won't automatically be given extra time because you are diabetic as decisions are made on a case by case basis.

She was worried about having a hypo or a high while taking an exam. The headmaster advised her to...

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She was worried about having a hypo or a high while taking an exam. The headmaster advised her to...

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Age at interview: 17

Sex: Female

Age at diagnosis: 3

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When I took my GCSEs I was quite worried that I wouldn't be able to take a drink in with me. And that if I went low I'd miss a considerable chunk of my exams. We spoke to the headmaster and he said, right what you can do is you can apply for extra time to the exam board. And the school did that and it's a case of you get, you can have extra half hour on the end of every exam and you can take that whether you've gone low or not. And if you do go low, if you're out of the exam for sort of 15 minutes you've got that half hour and you can take as much as you need to take that. You need to apply to the exam board but I did the same for my 'A' levels as well. They did that for me.

Speak to the head of, whoever runs the exam processes at the school. And then make sure, they make sure that all the invigilators in the exam knew that I could take a drink in with me and knew that I could take. I took a packet of glucose tablets which meant if I did start to feel myself go a bit funny I didn't have to leave the exam room. I could carry on with my exam. You don't have to take the extra time. You get asked at every exam if you need to take it, if you want to take it. As I say, you can take it if you've, even if you've not gone low.

You just need to apply for it to the exam boards and your exam officer or headmaster knows how to do that. But it, we didn't know this until we said, is it going to be ok for me to take food and water in with me. And they went yes and do you actually want this for you. It was actually my headmaster that contacted us. Because we were only a small school so he knew this when I was doing my GCSEs but it is available and it, it is a very good idea. It took a weight off my mind knowing that if I did go low and I did need to stop for 10 minutes I could make up that 10 minutes at the end of the exam or half hour if I wanted it. But it is available.

My mum and I didn't know about it until we were contacted about it but it is a very good thing to have. And it does mean you don't have to worry because I know that when I got nervous my sugars. I never know which way they're going to go. But I mean I sometimes go low and I sometimes go high and I was terrified that before the exam I was going to go low. Have a hypo and just be all messed up but with that, with that time, with that extra time that you've got you can get your head in gear and sorted before you have to go back into the exam hall or start writing again because you know that it's there. You're not losing any of your time from the exam. You've got the same amount of time as everyone else. So it's very good that the exam board allow for it.

Last reviewed December 2017.
Last update December 2017.